Comments

I agree, how do you get family and friends to understand? I've lost lots of friends and family who say "I'm crazy, I'm making it up." " you look fine, you just don't want to work". I truly feel, unless you suffer from this illness NO one understands what's it's like to be in pain 24/7 7 days a week and totally exhausted.

These symptoms plagued me for many years, and I believe are consistant with how I feel 7/24 but a couple doctors, one saying it is more of a female thing, the other simply shaking his head. But nothing else fits, diabetes problems have been ruled out, everything else has been ruled out but the pain is everywhere all of the time and it drifts around. Bad allergy days seem to worsen it. Vitals are pretty normal but the pain just never lets up.

Hello my name is Becky i have fibro and RA, needless to say my life has been turned upside down since these horrible diseases has took over ): the pain is horrific and very hard to tolerate most days! i wish there was more support here in Ky!

@LisaFaye I'm finding that it is almost impossible to get most of your friends, family and loved ones, as well as your co-workers to understand your fibro pain. I have given up trying to explain and simply focus on those treatments and new habits that help ME deal with MY pain, as we are all affected a bit differently. Sometimes it helps to talk with others who also have this problem and share information. It is VERY important to find a doctor who can help you diagnose your problem and not just "throw you into the pot" because they don't know what else to say is wrong with you. Learn about what we all have in common; tender points, symptoms and treatments. Find what works for you. I find that avoiding emotional drama scenes is very important for me. I can't care about whether or not someone understands or believes me since I do not look sick. I spent some time in a medical center learning about this problem, alternative treatments and the most important thing I have learned so far is that for every activity I plan - I must plan a rest period. Drop me a line if you need information or want to discuss.

What the above article didn't offer was the amount of vitamin D3 used. I have a fellow fibro friend suggest that is try this and to start around 6,000 units. I am using 5,000 and just started this a few days ago. Am I using enough? Will this help the fatigue? What other vitamins/supplements should I try for fatigue?

I agree, how do you get family and friends to understand? I've lost lots of friends and family who say "I'm crazy, I'm making it up." " you look fine, you just don't want to work". I truly feel, unless you suffer from this illness NO one understands what's it's like to be in pain 24/7 7 days a week and totally exhausted.

I get the same reaction. I do have a few people that seem to understand. But, until you live with 24/7 pain, do you? I realize I could be worse. But, aside from living with agonizing pain, I'm watching my life and bits of me fade away everyday. So, yes I could be worse, but I could be soo much better. I miss my life. And, there isn't a new life to replace the old one. All there is, is pain. The meds make you dizzy and even more exhausted. And, a lot of the pain is still present. So, you can't win.

@veebdosa If everything else is ruled out and they havent given you a fibromyalgia diagnosis you need to find another doctor or rheumatologist, that is it the doctor that gave me my diagnosis. And men get it too.

I've had fibro for about 3 years. I was exhausted every day all day. After going to the doc 6 or 7 times complaining about having the flu (with no fever), she checked the tender spots and asked if I had had anything traumatic happen to me lately. At first I said no, but as I continued to think, my grandson had past away (SIDS) in 2011. I was strong for my daughter and hadn't really grieved. This was the onset of my fibromyalgia pain. My work (military) had been very stressful and with the fog, the pain and exhaustion, I couldn't take it as I had always done. I forced myself to retire, and am staying home to recoup. I have hasimoto's, depression, metabolic syndrome, trigeminal neuralgia in my face, IBS, and sleep apnea. I, too, wonder where that fun loving, happy girl went; I really miss her. I only have so many hours in the day I have energy so I try to take it slow and get as much done as I can. If I mow the yard (45 min) then I am normally down for two days...I take 5000iu of vitamin D3 a day, but was completely deficient at one time. I also take magnesium 2X a day, calcium and B complex. One thing that I take that has really helped is D-Ribose. 1 teaspoon in some sort of drink in the morning and it really helps with my clarity, my energy, and overall outlook on life. No jittery feelings either. Read the book "From Fatigued to Fantastic" by Dr Jacob Teitelbaum, MD. That has helped me alot. Thanks for letting me talk about my journey. Jackie

Treating and beating fibromyalgia and chronic fatigue. By Dr Rodger H. MurphreeWhat’s in the CFS/Fibro Formula?• Vitamin A: 11,250 I.U. (33% from fish liver oil and 67% from natural carotenes [alpha, beta, cryptoxanthin, zeaxanthin, and lutein])• Vitamin C: 600 mg. as calcium ascorbate and magnesium ascor- bate buffered complex.• Vitamin D3: 200 I.U.• Vitamin E: 201 I.U.• Vitamin K1: 30 mcg.• Thiamine B1: 50 mg.• Riboflavin B2: 25 mg.• Niacin B3: 100 mg. (75% asniacinamide)• Pyridoxine B6: 25 mg.• Folic Acid: 400 mcg.• Methylcobalamin B12: 50 mcg.• Biotin B: 150 mcg.• Pantothenic acid B5: 200 mg.• Calcium: 250 mg. (76% ascalcium citrate-malate and 24% as calcium ascorbate)• Iodine: 75 mcg. (from kelp)• Magnesium: 350 mg. (54% asmagnesium aspartate and ascor- bate complex, 28% magnesium aspartate, and 18% as magnesium amino acid chelate)• Zinc: 10 mg. (as amino acid chelate)• Selenium: 100 mcg. (as amino acid chelate)• Copper: 1 mg. (as amino acid chelate)• Manganese: 5 mg. (as amino acid chelate)• Chromium: 100 mcg. (as chro- mium polynicotinate)• Molybdenum: 75 mcg. (as amino acid chelate)• Potassium: 148 mg. (as potassium aspartate-citrate)• Boron: 1 mg. (as aspartate-citrate) • Vanadium: 50 mcg. (as bisgly-cinato oxovanadium) This is a potent blood sugar regulator.• Choline: 75 mg.• Inositol: 25 mg.• PABA: 25 mg.• Citrus Bioflavonoids: 50 mg. • Malic Acid: 500 mg.• Amino Acid Blend: 1,000 mg. • Essential Fatty Acids: omega 3,6, and 9.• Potassium-Magnesium AspartateComplex: increases metabolism in the cells and mental and physical energy• Marine Lipid Concentrate: supplying eicosapentaenoic acid (EPA) and docosahexaenoic acid (DHA)• Organic High-Lignin Flax Seed Oil: supplying alpha linolenic acid, linoleic acid, and oleic acid• Borage Seed Oil: 50 mg. supply- ing gamma linoleic acid (GLA), linoleic acid, and conjugated linoleic acid (CLA)I took this formula to a vitamin shop and asked them to try and match this as close as possible. They gave me a really good woman's multi vitamin, a blend of complete amino acids and "tone", which is the good fats that we need. ( also a benefit of "tone" is weight loss). I have been talking these with two liquid supplements of vitamin B12 and D3. Before beginning this regimen, I was almost in constant pain. I hardly could get out of bed without literally pulling my self to the side of the bed in excruciating pain to get up in the morning. I took my pain meds as prescribed, 3 times a day, not always, actually hardly making it to the next pill before the pain had set in bad. I am unable to take Lyrica or anything like that due to getting all the worst side affects. I was in the fog most days and extremely exhausted, no matter how much sleep i got.After starting this regimen, I have more energy and have cut my pain meds in half, sometimes forgetting to take them because of lack of pain! I am not saying this is a miracle cure, but for me, it had made a tremendous difference! I was diagnosed with fibro 10 years ago, unable to get out of bed because of feeling as if someone had beaten me with a baseball bat. Even with the above, I still have my bad days, but not as many.My suggestion, is that you research what Dr. Murphree has to say and decide for yourself. The man make sense to me. They want you to by the book, but if you keep searching, you should be able to get an electronic PDF of the book for free. I did! Anyways folks, just wanted to put my two cents in!

Oh, also if anyone has good ideas to be able to accept our new limits, I would love to hear about them, as I am having a hard time accepting them and then end up in bed for a couple of days for doing too much.

@Tawnia_66 I've read his book and it is very informative. I believe he really understands our condition. I've had it for 12 yrs. and it's not easy to accept, but I've learned to not fight it and to try and pace myself most of the time. I have a real hard time relaxing.

Hi,I've had fibromyalgia for 20+ years and it's definitely slowed me down. I also have rls and arthritis in my hands, knees and back. In the last few months my symptoms of rls worsened and were no longer being controlled by the medication that worked for me for a long time, so went to my neuro and he increased my Neurontin, kept me on sinemet, added requip and those still didn't take care of the problem so he added klonopin. It's helping with the rls....He told me that the Neurontin was also for my fibromyalgia. Well, I'm on 2,700 mgs of it a day and I think it's helped my pain a little also. But...the fatigue and fogginess is awful. And just yesterday, while at a docs appt. I just found out that it could be the cause of my hair loss! I'm SO frustrated. Something is *finally* helping but in return I get hair loss???? I am going to see my primary care doc to speak with him about the meds, and hair loss as it's become serious. I don't wanna go bald and right now, very very thin. In the last several months, I've added calcium with magnesium, b12, D3 (I don't know how much to take so only take 2,000) multi to my regimine hoping it would help. We will c I guess. I wish all you wellgentle hugsorchidfusion

@devonna I have fibro and ostarithis ( spelling ) right now I have been out of work for the last 3 days and in such a fog I can't think straight. You are so right no one understands about this illness they all say you look fine . It is very stressful that is for sure. My job is very stressful. I have no support system. Thanks for letting me vent .

@devonna I have fibro and ostarithis ( spelling ) right now I have been out of work for the last 3 days and in such a fog I can't think straight. You are so right no one understands about this illness they all say you look fine . It is very stressful that is for sure. My job is very stressful. I have no support system. Thanks for letting me vent .

@Michelle_Whitfield-Summers we all have the same experiences, I used to think I want to beat people up when they tell me it is all in my head! but I know now there is no way for anyone to understand unless they ahve FM/ME. dont bother telling others

To all the FM friends: in addition to have FM/ME I am a pharm-D and have done extensive research about my illness as well as participating in clinical trials. I can say with certainty that I know more than a specialist about treatment of FM also why some people are more prone than others. I think that some people desperately want to believe there is a cure out there, but sadly there isn’t. Our improvements is totally in our hand though! Relaxation, removing stress in any shape or form, gentle e exercise, rest and contentment are essential. Don’t tell me it is not possible because I have done it myself. It is hard bur doable. Also this Vitamin D deficiency that some people in this site talk so much about is not the magic wand. Our treatment is possible holistically, but combination of medication, hydrotherapy, massage and more than anything understand and compassion of people around us. However like me if that is not given, start giving it to yourself, by eliminating everything and everyone that is making you worse. I am more than happy to give advice and help individuals

I hurt so bad all day everyday. I used to have a life till my mama died then it set in but my god that's been ten years ago. I feel like I've exercised for two weeks straight with no break. The backs of my legs hurt like crazy , knees, hips , shoulders . I go to a pain clinic and take perceset 7.5 and nuerontin 300 mg 3x daily. STILL HURT! Idk what to do. They had me on calcium and vitamin D but I couldn't tell it helped. Just shoot me please. Ppl are mean about it . They don't care if your in pain and look at me crazy when I ride the electric cart at Walmart. It's just aweful. Prayers please.

@Tawnia_66 What is the name of the multivitamin you got that had most of these supplements in it? I want to try this...a lot of the stuff on the list looks familiar like stuff i have tried before but maybe not enough in the right combination...

I would like to know if any other sufferers from this horrific "disease"as I call it,have periods of time which is undermined,have extreme fatigue even more heightened pain,that just doing the most mundane things .I literally have trouble doing anything......sweeping ,just trying to pick up the house a little, and all I want to do is lay down,but it physically takes me out ,short of breath,exhausted it's ridiculous.this is just all extra,from my hellish life,but I never know how long it going to last.I also suffer from pain exasperation so much more heightened,During these times I just want to die,OH but when that severe fatigue all I want to do is sleep if I can or just lie down.that totally takes me out of life.So for the good part if that stuff isn't going on I can just deal with my normal pain and fatigue.

@Kimberlyann So sorry that you have to go through this,seems we all have many issues,sometimes I think no one could be as bad as I am,then I read or here about someone else.I do hit the supplements hard the b',d's and I also take cinnamon and turmeric,for inflammation but when I'm going through a bad flare up I am out of the game completely.I also have disc disease and tendonitis,bursitis,and osteoarthritis,I notice that a lot of other people have multiple things going on,I hear ha girl we just have to take one day at a time,sounds cliche but that's all we can do!

I thought 3 + decades of endometreosis and 4 related surgery's, osteoarthritis, DDD,collapsed L3-S1 spine was bad enough but had fibromyalgia added. The lyrica didn't help when a reaction caused a fall dislocating shoulder.Through trial and error the seriton meds shouldn't have never been used, just learning my vitmD3 was 20+ instead of 60 it's soposed to be so i've found 4500iu more efficient, fish oil,multi,probiotics, cranberry, CoQ10,sublingual VitmB12 along with 10's unit,pain,anxiety,sleep meds has been the best combined remedy so far I believe nutrition is key less sugar less processed food

@karenjones I used to be totally drained until my research discovered how nutritional deficiencies affects our immune and health systems like I just found out my vitmD levels 1/3 of what's soposed to be so I added more with my other supplements too, it seems to help get me out of bed better.

I had gastric sleeve surgery and take 5000 mg of Vitamin D daily as instructed. I noticed the biggest improvement in my fibromyalgia and osteoarthritis when I started using Epsom Salts in my bath water. I started using Epsom Salts daily and dumped in a 4 pound bag each day for a week. Then I went to using it two or three times a week. I have a soaker tub and I soak in the Epsom Salts water, in water as hot as I can tolerate. This has greatly reduced my fibromyalgia pain and I have a huge decrease in my degenerative disc disease pain. The Epsom Salts treatment is the best medicine I have in my arsenal. If I could only have one of my meds or treatments, this would be it.

I have RA and FMS and to many other symptoms to go through. But, I found I have a grain intolerance. I removed gluten and stay away from grains. I try to eat little sugar and refined foods. I take vitamin D in large doses more than any of you are reporting taking, I also take Omegas, B, and calcium. I am no longer on any type of medication. I occasionally get a flare up but usually it happens after I eat out. I also get at least 7 hours of sleep a night. I hope this helps someone. I will also try Epsom salts in my bath next flair up. Thanks.

I have been on SS Disability for 20 years, it just switched over to SS Retirement. Once I was able to stop working, catch up on sleep (whichtook over 3 years) I was more able to deal with the pain. I see a massage therapist once a month, chiroproctor once a month and Dr. for manipulation once a month. I try to space these out to get the maximum benefit from each. I took my husband with me to my last manipulation and he had no idea just what I go through every day of my life until he saw and heard what the Dr. had to say about this condition. My primary care Dr. is very pro-supplement so I don't take a lot of meds but do take a lot of supplements. I will say, please be careful with the Vit-D as you can get too much. I take 10 mg. librium once a day as a muscle relaxer and dyazide so that I don't retain fluids but that's it for prescription meds. I am taking, with my primary care Dr.'s approval, Plexus slim, ProBio5, x-factor and I use their Fast Relief pain products, capsules and lotion. Nothing works for everyone but this has helped me more than I can say. I think there is something to this candida thing. I have more energy than I have ever had and that nasty "fog" is gone. For the first time in years I have projects I am getting to, and, finishing!!!!

Ive spent years battling fibro dealing with doctors who just never listen and never actually recommend anything that helps me but whenever i suggest me trying something that others with fibro have suggested they dont let me. so far nothing has helped and i dont know what to do anymore

@Kimberlyann I know what you are saying. It's so hard and people don't get it. It's a tough journey and I'm trying to find my way and what works to take the edge off. The pain wears on one, that's for sure. We do what we can and treat yourself with care. Praying for you to have some relief. Hugs.

Funny because the last blood work that I had before the car accident that preceded the fibro showed a very low vitamin D 16 was the number I believe and they didn't even worry about it, recently my doctor giving me high dose vitamin D shots every three months or so I supplemented with vitamin D three 10,000 mg every day for six months when I went back to the doctors my vitamin D was only up three points. This seems to be a chronic issue leading to a lot of health issues does anyone else suffer from low vitamin D or hypo picture wary problems? Question mark if so please email me.just a rose123@gmail.com. So we can compare notes. Rita done

@Tawnia_66 I agree--it is totally impossible for me to set limitations when I have "a good day." I totally overdo it--it's my husband who tries to get me to slow down and then tells me to STOP. I think that when I take it easy I still have bad days to follow--so I want to live life to its fullest when I can--at least I have that to think about and smile about when I'm "down" in the days that follow my "high." Now I usually try to do things with my grandaughters that is fun but still helpful to me--swimming has been the best thing. Also, I feel so bad for myself and everyone else who can't get friends and/or family to understand what you're going through. It can be so isolating. My grandaughters are REALLY attuned to me. At 10 and 5, they are gentle and helpful--they love to give glamma a massage!

@Kimberlyann The backsof my calves is THE WORST--constant pain. Once, this massgae therapist did something--and my legs felt great for a long time. So I do get my hubby and grandaughters to massage them when I can't get out to a maddage therapist. Also, from reading on this forum, I got a TENS unit--was under $30 on eBay and that seems to help-- it takes away the "feeling it constantly" at least for a while, sometimes longer.

I have RA and FMS and to many other symptoms to go through. But, I found I have a grain intolerance. I removed gluten and stay away from grains. I try to eat little sugar and refined foods. I take vitamin D in large doses more than any of you are reporting taking, I also take Omegas, B, and calcium. I am no longer on any type of medication. I occasionally get a flare up but usually it happens after I eat out. I also get at least 7 hours of sleep a night. I hope this helps someone. I will also try Epsom salts in my bath next flair up. Thanks.

I have RA and FMS and to many other symptoms to go through. But, I found I have a grain intolerance. I removed gluten and stay away from grains. I try to eat little sugar and refined foods. I take vitamin D in large doses more than any of you are reporting taking, I also take Omegas, B, and calcium. I am no longer on any type of medication. I occasionally get a flare up but usually it happens after I eat out. I also get at least 7 hours of sleep a night. I hope this helps someone. I will also try Epsom salts in my bath next flair up. Thanks.

I live in a hot Epsom salt bubble bath every night before bed. Relaxes the muscles n body so much n the Epsom salt helps draw out toxins. Also, anytime I have a major flare up, I hop right in the bath.

@kygal2009 I also have degenerative disc, plus bulging n herniated discs, bone spurs, sciatica,a few other things too on top of fibro. On a lot of pain meds n muscle relaxers. Best instant relief is hot Epsom salt bubble baths. I read today however, also add ginger to the bath n soak for at least 45 minutes. Its supposed to help draw out more impurities and leave the body feeling more refreshed n relaxed.

I could almost cry when people don't understand. One time a lady hit me. I asked her to PLEASE not hit me because I have fibromyalgia. Of course I had to explain to her what it was. Her response was "Oh well!" I'm not sure if she didn't understand or just didn't care. I've told people "unless you have this kind of pain, you have no idea how it hurt!" AND now over the past few years I've got burning and tingling in my legs and feet. Somedays it hurts to just walk.

@Tawnia_66 I'm a patient of Dr. Murphree. He definitely knows his stuff. I've been working w/ him about 4 months. I'm not cured b/c that's not possible, but I am slowly seeing progress. I can't recommend his videos and book enough.

@NeverEverGiveUp@a1mymail10@veebdosaYes, I think when your muscles tighten up, having some-one do pressure points, starting at the top of the muscle and gently working down does release the "knots"..I know how people feel when there is no one around that understands how this "invisable" monster attacks and robs you of the joy in life.I am too stubborn to give up, and try to carry on as well as I can. VitaminD3 in mega doses does help, try to get a rheumatologist to see you and verify the diagnoses.